Part 2: David Kirby on HuffPo "Is Obama Ready to Take on Factory Farming?"
Holland Center for Autism Treatment in New York Times

Will My Daughter Always Live in Elmo's World?

Sesame_streetBy Kim Stagliano

The other day a friend whose teen son has autism told me he still is interested in the Teletubbies, despite her best efforts to move him toward more age approrpriate programming. My oldest child is 14 and still loves Sesame Street, which is celebrating its 40th year on PBS this week as the new season begins. Her first word was "Ober" (Grover) at ten months of age. I watched the first Sesame Street episode in 1969 in my first grade classroom. Now I've had a house full of Sesame Street toys, DVDs, games, figurines for over 14 years.

My friend said, "I swear that's when he regressed and he just stopped developing at the Teletubbies stage." Something about her comment struck me. Do our children's interests remain at the point of their regression? Are those programs like old memories of when they felt well? Or simply rote comfort?

The Hartford Examiner ran a post about Sesame Street and autism. I ran into Rosco Orman (Gordon) and Dr. Loretta Long (Susan) at The Book Expo American in 2007. After I got over my star struck moment, I asked them if they'd consider addressing autism on the show. Read Sesame Street Still Makes a Difference. Especially to Those with Autism.  

Kim Stagliano is Managing Editor of Age of Autism.

Comments

Cathy Jameson

It was this character: http://m.youtube.com/watch?v=jjNoeYxzpa0 Ironically, about a year ago, Ronan started watching the Miffy shows again. It was soon after he mastered how to search YouTube videos on his iPad. He'd type in the name, press play and then take a step or two away to watch. That video of the birthday celebration was not on the videos we owned but soon became a favorite. We were all shocked because he was so afraid of them for so long.

Jillian Tyrie

Cathy Jameson, do you mean Mumfie? I too was scared of that film as a child and later got over my fear of it. Give him some time.

Elizabeth Hensley

My Father who was definitely along the spectrum and mostly an undamaged Autist as he grew up before vaccinations though would have had some mercury exposure from coal burning furnaces in St Louis Missouri, and who worked since the age of 8 and who worked as a claim investigator for the Missouri Pacific Railroad and saved that company millions of dollars from fraudulent freight claims, absolutely adored Sesame street! Because he wasn't damaged as most of us Autists are today he wasn't sick until he got really old and only then from typical old age type stuff and from self neglect. He never brushed his teeth and was delighted when most of them fell out "because I don't have to go to the dentist." So he could no longer chew and his death certificate read, "malnutrition." For all of that he was, as most of my species very long lived. He almost made it to 80. Healthy well taken care of ones of us live much longer than that. His gut never hurt as mine does. But he watched that show with delight from almost its first broadcast. Some of what we are is normal for our species. We would be different anyway. We are indeed the Neanderthals, the Northern, cold adapted, more introspective species. We would take longer to grow up due to living longer and that would still be labeled, "pervasive developmental disorder due to our immaturity in middle school and high school. We may even still be face blind and have trouble with facial expressions due to our Neanderthal ancestor's faces being covered in fur. But we would not be sick and dysfunctional, just 'eccentric.' My Father certainly was not sick ! But my mother became that way and I was all my life. I was vaccinated and my mother was after I was born due to her coming in contact with Doctors due to her taking me to them and their getting their hands on her too! :(

linda cain

My son who has austim for a very long time would only watch wheel of fourtune so when he was much younger i taped a show & spent many days & hr,s rewinding it if i did not then he just cried & scream wheel i don,t remember when he gave it up after that was barney, elmo, ect. so after he got older knowing that he could hear me i began to say the big boy stuff & tell him he was getting to old for some he still like all the cartoon,s but does watch alot of different things also up till 3 r 4 yr,s ago he still wanted to trick r treat as said above knowing he can hear me even tho he can,t reallly communitate back i began telling him he was getting close to be a man & he was really to old fot t r t it was for little ones & he shook his head saying yeswhich ment ok he did not want to do it that he rather stay home & give out treats just thought i would comment on this that it might help any of you.

Desiree

Our son (15yrs) still goes to his legos when he needs to step back into a calmer world. He is Aspie now (diagnosed at 3 with autism and ADHD)and mainstreamed with no aide in 4 of 6 classes in high school. The legos are comforting to him. Manipulating the pieces into whatever and where ever his mind goes seems to release the tension a day in high school or out in the world might bring. While he does not do this often, we are ok with it. He has come so far, whatever makes him comfortable in his own skin, is the least we can do, since it harms no one and the legos stay in the basement. He does not include his cousins or the few friends he has in his legos 'moments'.

Gatogorra

Thanks for this, Kim. I missed this over the busy weekend. What a brilliant hypothesis-- that some kids might cling to certain shows even if they've outgrown them because they're trying to hang on to memories of once having felt well and whole.

Sherry Goodrich

My 3 year old son(not yet diagnosed)who I am positive is Autistic, loves Bob the Builder. After his MMR vaccination, he lost many skills. He stopped eating, talking in sentences, didn't recognize family members, stopped potty training, forgot his letters, numbers, shapes and colors. He also stopped using a fork and spoon. Bob the Builder was the one thing that seems to make him happy during this confusing time for him.

CindyPDX

"Do our children's interests remain at the point of their regression?"

I've always wondered that as well and wonder if expanding/helping/contributing to the interest is bad or really good and helpful.

Our one twin son, Cameron (now 6 yrs old) dx'd with ASD shortly after they turned 4 years old is hooked on "Thomas" and has been since he was 2-3 years old.

Fortunately his NT twin brother Andrew also enjoys Thomas as well because we have almost every kind of THOMAS toy and track set out there. We now need a bigger house. Tracks are often set up from one end of our house through, under, and over to the other end of the house.

It's well worth it though because IMHO, THOMAS has been the best all around therapy for Cameron - Thomas opened the doors for Cameron and we were and are still thrilled about that.
Because of Thomas, he understands emotions, friends & friendships, relationships, colors, numbers, letters, music and singing, helps him have an imagination, to understand good and bad situations, to talk & communicate, to take turns, to work the DVD remote to play interactive games, and much more.

He enjoys The Wiggles, Noddy, Pingu, Max & Ruby, Curious George, and Spongebob, BUT Thomas out shines them all and continues to be his #1 favorite. He even loves the new CGI Thomas & Friends shows (we call them Talking Thomas).

My husband and other NT men in our family often get down on the floor for hours with the twins and build the ultimate track layouts together. They really enjoy it.

I figure if Cameron is still stuck on Thomas when he reaches his teens, it's not so bad. Many grown NT men love trains (even Thomas) and partly why we are going to this event today: http://www.greattrainexpo.com/

Yes, Thomas is a VERY useful (helpful) Engine - that's for sure! (see Twins meet Thomas here: http://www.youtube.com/watch?v=5_5XV-yZbNw ) I guess we're lucky that Cameron favors THOMAS and that Cameron is a boy.
I just wish Thomas could help teach Cameron to go #2 on the potty and to stop toe walking / standing that started up around 34 months old.
We're now in process of getting all day braces for him (night braces are NOT enough). We plan to call them his "piston rods" to help him get around Sodar Island and other fun places, just like the ones Thomas has to wear on his wheels (feet).

We've been telling him to drop his coal (#2) in the freight car (toilet) per Sir Topham Hatts' orders but it has not helped (yet) but I think we'll get there eventually one day.

GrammaKnows

Sesame Street was there for the first alphabet...and I have a video of the sweetest voice on the planet singing the alphabet segment complete with sounds for the music notes in the bridge because he didn't yet know that notes are different than phonics...his first spontaneous social contact was running up to a baby in a car seat and scripting an Elmo/Hi Baby sequence, and being delighted the baby smiled at him...and then there was the Sesame Street story "Everyone Makes Mistakes" Having the book, him babbling page by page in sync with the video, confirming that he did, in fact read well before he could talk.

We're moving on to Transformers now, after a long season of everything Thomas, but Sesame Street, Disney movies, Teletubbies, Baby Einstein, Little People, Bear in the Big Blue House and Blue's Clues still find their way into the VCR on a regular basis.

Eli didn't "regress", the mercury fillings mom got when she was pregnant was there from day 1 although the vaccines did push him down further...but those videos were the door through which we were able to beging to make sense of the world. The very first play activities were swings, slides, balls and water a la the clips in Baby Einstein. I stalked EBay for al the pieces seen in the Little People videos so we could re-enact the segments...same for Thomas. He made me get down on the floor with the video camera to "shoot" his scenes.

Then he discovered YouTube. He found kids dressed in character costumes, we bought Halloween costumes on sale and he"became" the characters and scripted their lines. He watched toy commercials and learned how to play like the kids he saw. He found adults who like Thomas, trains & Transformers (among other hobbies and challenges) and listens to their clips about their collections, reviews on products and "How To" transform the transformers.

I'm ok that he reviews the baby vids...he learns what he didn't know before. He finds things to look for when "surfing". It's never been an activity for just occupying time from the moment I "got it" and saw the only things he knew how to do was what was in the Baby Einstein clips.

I'm not crazy about him going hysterical, laughing at "Fart Jokes" on YouTube...but a 7 year old who thinks farts are funny is just a 7 yr old...and it doesn't matter he has autism when he finds something funny that all the other second grade boys think is funny.

He's getting an assortment of "real" percussion instruments for Christmas. I'm hoping that means he pulls out the Sesame Street videos that have the characters and kids playing music on trashcans, and the Blue's Clues episode on Rhythm, because another little piece of his world will have a way to fit together and make sense.

Henderson

We've been very lucky. We started GFCF the night I was screaming at my husband - three weeks post flu shot spiral to you know where. He is now Aspergers/ADHD.

We had to "graduate" him to the next step, every step of the way though (and still do). Teletubbies, Thomas, The Wiggles, Scooby-Doo - right up to Discovery Kids (where he is now). Though, he'd be very happy to watch any of the above - given the chance - right back to the Teletubbies.

The Teletubbies will always hold a special place in my heart as it taught "big hug".

The Wiggles? They taught humour/plots in very short skits (these were the days when he couldn't follow the story line of an entire Disney movie). I became such a fan, that I cried when I found out Greg (yellow) was leaving the group. I even rushed the stage our third and final show and cried when they left the stage (w/new yellow Sam), knowing that I would have to graduate both of us from "the big red car".

One thing from our experience that I will always carry with me - when I see a toddler transfixed, I mean transfixed by the Teletubbies - Oh boy. It's time to look for pointing, waving and imitating (while praying).

Isaacs Grandma

This is quite interesting!
I think the answer to the question you have opened is "both."
I have loved reading the replies!!
My Grandson has been obsessed with Elmo since he was a baby. He is almost 5 now. I wonder if this will change as he gets older?
When he is having a melt-down, we put on Elmo and he stops. My daughter sings the "Elmo's World" song to get him to look at her and smile.
I also notice that when I do and say things to him that I did when he was a baby, he giggles. He remembers.
His newest obsession (besides Elmo) is markers! Oh my! My daughter sent a picture to me of his "skin art!" LOL!!
They are going full force with the GFCF diet, have an appt. with a DAN! Dr. in the area in a few weeks, and I am anxiously waiting to see what changes are awaiting us.
I guess time will tell.

jen

"the memory of understanding it,the sense of home, the feeling of safety.""frightening to see their world vision narrow this much"... These are some poignant observations. That's all I can say. Very poignant. Very moving.

Teresa Conrick

Hi Kim,

I couldn't agree with you more!

"Do our children's interests remain at the point of their regression? Are those programs like old memories of when they felt well? Or simply rote comfort?"

Megan is 16 and spends most of her time watching her old "videos" from before and during her regression. Barney, Hap Palmer's Baby Songs series, a bit of Thomas, and lots of Sesame Street. If I were to get her something in that age range (1-5) she would still switch back. It is not the developmental goals of the show but imho, it is the memory of understanding it, the sense of "home", and the feeling of safety.

ColberiZm

My son's autism emerged around the time Steven Colbert appeared in an Elmo video as a giant blue talking letter Z. I'm not saying its, you know, his fault or anything, but my kid was not into it, and completely avoids language altogether now. You just don't mix cynicism, language, and Elmo man. Its just wrong.

My son watches Elmo again, and I'm ok with that. He still won't have anything to do with the letter Z though.

Benedetta

Eucidatus;
The medical community - my son's peds never ever said he had autism, I spent money, energy,and tears for them to come up with a dignosis of tourettes.

The special ed teacher when he was in the seventh grade finally told me that PDD-NOS was autism. She also told me to go to some autism meetings and compare!!!

I did and oh yeah!

Education system here in Kentucky (don't care that people view us as bare footed hillbillies) was always good to us. BUT I Will never say that of the medical people.

It says in your link that Illinois is the worse in the nation?!!! I am so sorry!

Robin Rowlands

This is a good point whilst our Merlin is one of the lucky ones who has managed to break free. Diet and Thomas the Tank Engine played its part.
For some years Thomas and the Fat Controller gave us the only handle we had on Merlin and his memory of the lessons he had already assimilated from this kids program, before the injection hit gave us a back door that we could use to communicate and eventually win him back.

Robin Rowlands - Merlins Dad

Gayle

I guess every child truly is different in the choice of toys that amuse them. At first, it seemed my daughter would never stop playing with rubber duckies, and my son would remain fixated on Thomas the Tank Engine. My daughter eventually graduated to My Little Pony figures and then to Littlest Pet Shop animals (boy does she love them). But, to this day, she rejects all dolls and kiddles (things I loved as a child and hoarded for her in our basement). She still refuses to hold or play with baby dolls and all other dolls (Barbies included). When my cousin gave her a plush ballerina doll as a gift, my child would not even accept it in her hands. It was actually embarrassing. My son has now moved on to Transformers and he adores all of them. I am hoping it leads to a career in engineering (wishful, dreamy thinking on my part, I know). It is interesting to think that as they slowly developed verbal skills, their interests in toys changed as well. I had never made that connection before. I am actually grateful and proud that both my children have rejected High School Musical music and video (all the rage, apparently, with elementary school students. Yuk!) I hate it, myself.

Diane

A few years ago I rounded up all the Sesame Street, Elmo and the like videos/DVDs and put them away as my son aged in an attempt to get him onto age appropriate viewing. Now at age 8 (almost 9) we're still watching them - he found my stash. It really inferiates his twin brother who doesn't want to watch the "baby shows."

The real issue is dealing with relatives/friends who buy gifts that are age appropriate that my kid wants no part of - he wants the new Thomas / Elmo video!

Elucidatus

Hi Benedetta,

I had a similar issue when we were tyring to get services through ARC/The Children's Waiver http://www.thearcofil.org/

They made it extremely difficult for us because according to the ARC of IL their criteria is different from the medical field criteria as to what they consider is Autism.

They said that PPD-NOS is not considered Autism and were going to have to give our services to someone else who was qualified as having Autism. We fought like crazy to get him the services he needs. The bad part is once we got them to reconsider and work with us the state cutback all services and now we are on hold. Not sure until when......

Good Luck!

after GFCF, etc.

My daughter maybe doesn't have much memory of time of feeling well to want to relive. She had regressions before age 1. Except for eating, ceiling fans, sometimes water colors, sometimes music but sometimes definitely not, I struggled to find things that would engage her.

She found her own interests after we changed her diet, cleaned up her environment: barbies, ballerinas, mermaids, and for a while now Hannah Montana. It's somewhat like she is living her girlhood finally, though delayed by a few years and somewhat in slow motion.

LisaR

My 8.5 year Kyle old loves Elmo. Last year we had the opportunity to meet Elmo and Kevin Clash in person. I even got to tell Kevin how my son made up with own sign for Elmo and taught it to us (basically the letter E). Kyle will find Teletubbies on youtube (lots of people have too much time on their hands and not all teletubbies on youtube are G rated BTW) and can find whole epiosdes of copyright protected Baby Einstein on Chinese and Russian websites. I love Sesame Street too - but really want my son to move on to more age appropriate shows.

Cathy Jameson

There is one movie that Ronan will not watch--he almost has a look of fear when we try to put "Miffy" on the tv. His big sister adored this movie, had it as part of her goodnight routine right about the same time Ronan started to slip away and got sick. We don't attempt to watch Miffy anymore even though I know my 2 youngest would love the animation and music. It's sad to see Ronan get so scared from a memory so long ago.

K Fuller Yuba City

Cartoons were never of interest to our son when they should have been. Sesame Street Barney, Teletubbies etc being more 3 demensional were very interesting to him. I think the shows are all Social Stories for typical children, and they do teach skills and morals that will help all kids. They would really be doing something good if they had a character regress as part of the story.As long as the story line isn't "Sometimes, this just happens"

Matt

Benedetta,

We live between Chicago and Milwaukee on Lake Michigan.

Liam is 8rys old, diagnosed at 5 yrs, re-diagnosed at age 6 at the request (and cost) of the School District.

Liam is number four of nine with his oldest brother (13yrs) Diagnosed Aspbergers. My wife and I greatly suspected he was autistic when Liam was 2.5, it just took that long to get his medical diagnoses.

We have enjoyed a three year break from this fight as Liam had 35 hr per week ABA for the past three years through the state waiver.


He has been in school for 3 weeks now and the fight is back on because there is no way in hell we will sign his IEP W\O an Autism Diagnoses. His older brother is not considered aspbergers by district as well.


We are now off to his IEP meeting where I think I may have to go "Gary Null" on them.


Benedetta

Kim,
It seems to me that they obsess on things and the same things for a very long time.
My son after obsessing forever about batman did move power rangers, then star wars, then Ninja Turtles, Titantic - on to Dragon B Z thats been going on for 11 years now.
I do see though that Final Fantasy stories are crept in the last five years and is slowly rooting out Dragon Ball Z.
Wish it was something that would make him employable and rich.

Benedetta

Matt Flynn;
Where are you located, that a nonverbal would not be out righ autistic?

It could also be that he is still young?
My son was practically nonverbal right on up to the third grade!
They did not dignose my son untill he was in the 4th grade, and even then I did not know that PPD-NOS was autism.
I was a highschool teacher too, and my mother was a second grade teacher (I am so ashamed that I did not know and feel a little red in the face when I think of it) I thought developmental delayed meant delayed but going to catch up someday in development, did not have a clue it was in the spectrum!
Just wondering if this could still be going on in modern times and all?

Kathy Blanco

I conquer, my 29 year old son still loves Barney, Disney Movies, etc...and I look at it like this was when he stopped developing. It makes total sense to me...and you would think, it also comforts our kids in a way? It must have been frightening for them, in some way, to see their world vision narrow this much? When, a child especially regresses, and goes backward, even more frightening. Why would I suggest then, that autism is alzheimers in childhood? And, the Alzhiemers we see in elderly, is autism in them? I am sure my children will still keep watching the DVD's and shows...and to be honest, we are a real fun family when the grandkids come over...perpetual two year old here....they can relate well with my son and daughter...they speak their language....for now...but not for always...

Autistic Living

I think about the same thing, but we're still at least NEAR age appropriate. So I'm not giving up hope yet.

Wiggles and Teletubbies here, with some Elmo sprinkled in. However he does still have a fascination with toys that were age appropriate when his drastic regression took place.

Matt Flynn

Kim, you may be on to something.

Our Son Liam regressed into autism at a point when his interest was with the outdoors. He loves to watch the people walking dogs and babies being pushed in strollers. Squirrels, Rabbits, Cars Airplanes, busses and the Moon is what he most likes to spend his time doing.

After 3 yrs of ABA at home, he is back in school this year where his teacher had to pull the shades in the classroom in order to control him.

He never had interest in watching tv still does not have an interest in watching. I think I will use this one today in our IEP meeting where his IEP team is refusing to classify him as autistic, a 8yr old non verbal child with two medical diagnoses of autism.

bensmyson

One of the things on my list of stuff to do today was to write/call Pampers to inquire about the possibility of buying ONLY the diapers with the Cookie Monster on them. Ben has become fashion conscious. Will not wear anything else without trickery and/or a big fight.

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